"Hyperandrogenic" symptoms 4 months after quitting Propecia

Member Stories
#1

  1. Where are you from (country)?
    UK

  2. How did you find this forum (Google search – if so, what search terms? Via link from a forum or website – if so, what page? Other?)
    Googled symptoms

  3. What is your current age, height, weight?
    25 years old, 6 foot 2, 75kg

  4. Do you excercise regularly? If so, what type of excercise?
    Cardio/weights approx. twice a week

  5. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)?
    Normal balanced diet

  6. Why did you take Finasteride (hair loss, BPH, other)?
    Hair loss

  7. For how long did you take Finasteride (weeks/months/years)?
    3 months

  8. How old were you, and WHEN (date) did you start Finasteride?
    24, mid-November 2014

  9. How old were you when you quit, and WHEN (date) did you quit?
    25, mid-February 2015

  10. How did you quit (cold turkey or taper off)?
    Dropped from 0.5mg ED to 0.25mg for 3 weeks before stopping completely

  11. What type of Finasteride did you use – Propecia, Proscar, Fincar or other generic?
    Propecia

  12. What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
    0.5mg for approx 10 weeks, 0.25mg for 2 weeks

  13. How long into your use of Finasteride did you notice the onset of side effects?
    4 weeks

  14. What side effects did you experience while on the drug that have yet to resolve since discontinuation?
    Burning, itchy, painful scalp/hair, with no physical signs of inflammation. Increased libido. Massively increased sebum production on the scalp and face, leading to greasy skin/hair and increased acne. Accelerated hairloss.

Put an X beside all that apply:

Sexual
[ ] Loss of Libido / Sex Drive
[ ] Erectile Dysfunction
[ ] Complete Impotence
[ ] Loss of Morning Erections
[ ] Loss of Spontaneous Erections
[ ] Loss of Nocturnal Erections
[ ] Watery Ejaculate
[ ] Reduced Ejaculate
[ ] Inability to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

Mental
[ ] Emotional Blunting / Emotionally Flat
[ ] Difficulty Focusing / Concentrating
[ ] Confusion
[ ] Memory Loss / Forgetfullness
[ ] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[ ] Lack of Motivation / Feeling Passive / Complacency
[ ] Extreme Anxiety / Panic Attacks
[ ] Severe Depression / Melancholy
[ ] Suicidal Thoughts

Physical
[ ] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[ ] Testicular Pain
[ ] Testicular Shrinkage / Loss of Fullness
[ ] Genital numbness / sensitivity decrease
[ ] Weight Gain
[ ] Gynecomastia (male breasts)
[ ] Muscle Wastage
[ ] Muscle Weakness
[ ] Joint Pain
[ ] Dry / Dark Circles under eyes

Misc
[ ] Prostate pain
[ ] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[ ] Vision - Acuity Decrease / Blurriness
[X] Increased hair loss
[ ] Frequent urination
[ ] Lowered body temperature

[ ] Other (please explain)
Constant scalp pain, itching, burning, tingling.

  1. What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
    Nizoral shampoo, Fluridil, topical Spironolactone, various other medicated shampoos (tea tree, coal, zinc, capsicum)
  2. If you have pre or post-Finasteride bloodtests, what hormonal changes have you encountered since discontinuing the drug (pls post your test results in the “Blood Tests” section and link to them in your post)?
    Only a post-Finasteride blood test which showed my Testosterone as being in the high range 30nmol/l (normal range 5-28nmol/l).
  3. Anything not listed in the above questions you’d like to share about your experience with Finasteride?
    I’m experiencing something known as “reflex-hyperandrogenicity” which is a possibility when taking any hormone-altering drug. I understand this forum is mainly for people with “hypoandrogenic” symptoms rather than “hyper”, but the principle is the same – Finasteride has done long term, possibly permanent damage to our endocrine system/androgen receptors.
  4. Tell us your story, in your own words, about your Finasteride usage and side effects experienced while on/off the drug.
    Hey guys. I’m wondering if anyone on this forum has experienced “reflex-hyperandrogenicity” from taking Finasteride. A quick Google search will show you its all over the hairloss forums. I seem to have an extreme case which I developed while taking Finasteride – symptoms were increased sebum production on face and scalp, accelerated hairloss, increased libido, but the horrible part is the “MPB itch” I developed around 3 weeks after starting Fin. This started as a slightly tingly sensation above my right temple but developed into a burning, itchy pain which is all along my frontal hairline and 4 months after stopping Fin shows no signs of stopping. Sometimes the pain is excruciating and the itch is so irritating its having a huge effect on my personal and professional life. I wake up every morning with a ridiculously greasy scalp and painful itch, and I have to deal with it every minute of every day. There are no signs of inflammation or redness, no dandruff or evidence of “seborrheic dermatitis”. I’ve obviously spent the last 6 months researching this extensively and I believe Fin has caused this by PERMANENTLY “upregulating“(multiplying and making them more sensitive) the androgen receptors in my scalp (these control sebum production and are responsible for hairloss, and thus the itch/pain associated with accelerated hairloss). Its generally accepted that the hair in the front of your head is more sensitive to Testosterone/DHT, so I believe the hugely increased sensitivity I have from Fin is causing this itch/pain in the front of my head. There are studies, some quite recent, that show Finasteride intensely upregulates androgen receptors, months or years after stopping the drug (ncbi.nlm.nih.gov/pubmed/21557276 for example)

This is an extremely rare reaction and usually resolves itself as soon as you stop taking Fin. There are a handful of guys on the hairloss forums however that got this condition from taking Fin and are still dealing with it 2, 3, 5 years after stopping. The thought of that terrifies me because the 24/7 scalp itch/pain, coupled with the greasiness and hugely accelerated hairloss, have made my life a living hell. It shows no signs of getting better and I’ve tried every topical/medicated shampoo in the hopes of treating it. Sometimes I can’t sleep because the itching and pain is so bad. I’m on the waiting list to see a dermatologist (NHS in the UK) but I’ve been waiting too long so I’m now paying upwards of £1000 to see a private dermatologist and an endocrinologist – as I believe permanent damage has been done to my endocrine system. I’ve researched enough to know that this isn’t really treatable though; the only possible solutions are anti-androgens which are way stronger than Fin and come with much worse side effects, and will potentially cause a “reflex” androgenic reaction of their own. As I’m sure you guys can relate, taking that pill was the worst mistake of my life and one I’ll regret forever. I am beyond angry that this isn’t even listed as a side effect when I could potentially be dealing with this hell for years to come.

#2

There was a Dr. that had PFS-like issues from Accutane, who supposedly fixed himself by taking Finasteride. He wrote a lot about being able to induce a second “puberty” by using Finasteride to upregulate androgen sensitivity. His name is Dr Pezzi I think.

Either way, your are likely to find very little info. on this in literature, hopefully the PFS Foundation can shed more light into this within 6 or so months when the first big study is published.

I think most PFSers would switch positions with you in a heart beat though.

#3

A study found massively upregulated androgen receptors in foreskins of PFS victims.

#4

So what about the thread about the drugs that down regulate the receptors? Anyone tried them?

#5

Do you have blood tests to share? without blood report it is all speculation.

#6

i am still experiencing hyperandrogenity my dht is low low but i am too much aggressive , chasing girls, trying to flirt etc i dont know why, i dont feel proviron/mesterolone(i used to)

#7

I had blood test done and everything was within normal range apart from Testosterone which was 30nmol/l (normal range 5-28nmol/l). It didn’t show my DHT but I’d imagine thats very high as well. I don’t think my androgens are going to tell me anything though, it’s my androgen receptors, and their increased sensitivity, that are causing me to experience this “MPB itch” on such an extreme scale, and the increased sebum production (more DHT = more sebum).

#8

There’s also no medical literature on “reflex hyperandrogenicity” from Fin either, but plenty of anecdotal stories. Its basically just a theory, but it makes perfect sense when you consider that upregulation of ARs from Finasteride has been shown in several studies.

#9

Could you point me in the direction of that thread? I’ve been trying to find things that “downregulate” or even degrade androgen receptors in the scalp, to see if it helps with the itch/pain.

#10

Up regulated receptors don’t explain our symptoms. Down regulated maybe.

#11

One more thing in common with what happened to me. I just hope you will not crash as bad as I did…

#12

But they might explain mine? I seem to have the opposite symptons to sufferers of PFS (increased libido, ridiculously oily face/scalp, acne, hugely accelerated hairloss, constant painful scalp itch/burning/tingling).

I understand this doesn’t compare to the suffering of PFS but its still valid to me and having a huge effect on my physical and mental wellbeing. Nobody on the hairloss forums will even entertain the idea, same as they won’t entertain the idea of PFS.

I’m just making this post in an attempt that hopefully someone else will have experienced this. I thought this was a forum for anyone with persistent side effects after stopping Fin, not exclusively PFS.

#13

I’ve had several private messages from user “vincent” but I can’t reply because I don’t have private message function.

Anyway most of my hyperandrogenic symptoms like oily scalp/face/acne have been kept in check by using medicated shampoos and facewipes etc. Sex drive still remains high. Obviously these symptoms I can live with…

However the scalp pain/itching/burning remains unbearable and all the affected hairs on my head are miniaturized and falling out. It is 24/7 and I can barely sleep at night or get out of bed in the morning to go to work. I’ve already lost my girlfriend and some of my friends due to being so depressed and stressed from this for 8 months now.

I’ve been to see an endocrinologist who recommended I get a more in-depth blood test including DHEAS, SHBG, TGF-1, DHT, Androstenedione etc. I will report back with these results.

The dermatologist I saw thought I had atypical pain syndrome and prescribed me Amitryptyline for the pain and some hydrocortisone to apply to my scalp at night. Neither have worked.

I’m pretty sure I’ve permanently and massively upregulated my androgen receptors and become hypersensitive to DHT, which would explain the micro-inflammation going on in my scalp as DHT attacks the hair follicles (this is the pain/burning sensation I feel). I have no idea how to treat this, none of the derms/endos I’ve seen can explain it and don’t think Propecia could do this. Its now been 5 months since I quit Propecia so I am terrified this scalp pain will be permanent. I can’t even find anyone online who has experienced something similar - other people have experienced reflex-hyper but nothing with this severity of scalp pain.

#14

Do you have increase muscle mass too?

#15

You should really try very cold showers. It helped With the itching in my case

#16

I think I probably would if I went to the gym, though I can’t really be sure, this scalp pain is so debilitating I can barely get out of bed in the morning. Like I said most of my other symptoms, with the increased libido, oiliness, I can live with. But this scalp pain is unbearable, I have trouble sleeping at night, my scalp just constantly feels like its on fire.

Its been 9 months now of chronic pain and scalp inflammation. Been to see every dermatologist/trichologist/endocronologist. Blood results are all within normal range, though I am still awaiting DHT which I think is the culprit of this.

I think the last bullet in my gun is Sulfasalazine, a powerful anti-inflammatory and mild immuno-suppressant in the hopes that if this is scalp pain/itching is caused by DHT, then this may work to relieve the symptons. Pretty heavy drug with some nasty sides, but I’m desperate now. If that doesn’t work, and it’s just purely DHT causing this, then I’m screwed because I don’t ever want to take a 5AR inhibitor like Fin again.

#17

I went through a period like this a few years before I crashed

#18

Yeah, me too. It was a few years of this actually. I think it started while I was still on fin… and continued for 3 years while off and then boom! CRASH. After I had been around 2.5 years OFF fin I had basic blood test done and it showed a testosterone level above the “normal” limits. After the crash I was very near to the low normal limit.

#19

My situation has just gotten worse. Relentless scalp pain/burning/itching, it doesn’t stop not even for 5 minutes. The only escape is when I’m asleep, and it often takes me a long time to fall asleep. I was supposed to be traveling the world with my best friend in November, that’s been called off now. I’ve been to every possible doctor and they’re all useless.

One tried me in a trycyclic anti depressant, which can reduce pain/itching, which has now given me gynecomastia, even though I only took it for two weeks. So I’ve got that to deal with now. I’m losing everything, lost my girlfriend and most of my friends, my body and hair are fucked up, losing touch with reality because of how relentless this is, losing my mind because this doesn’t allow me to think or feel anything else. I don’t socialize, go out or do anything anymore, I spend half my life on the internet searching for something, anything that can treat this. Like I’m sure you guys do, every day, probably every 5 minutes, I fantasize about my life if I hadn’t taken Propecia. I didn’t even need to take it, I had a few millimeters of receded hairline. I read Merck’s studies about 2% side effects, which went away when stopping the drug, and thought I had nothing to lose by trying it. Now I know I’ll be battling this chronic pain, burning and itching for the rest of my life. This may not be the same as PFS but I know what it’s like having something so seemingl harmless take your happy life away from you.

#20

Dench57 please contact me ASAP. I have some ideas for you. Thanks.